how to cope with parkinsons

All posts tagged how to cope with parkinsons

I sent a letter to my mom the other week, on some pretty note paper that I found at a garage sale, with a nice stamp. In it I wrote of my childhood and how I remember her as a blur of movement, laughter, and storytelling. She was high spirited in her domesticity: we had fantastic birthday parties and fun-filled summers and holidays. She was frugal and creative, loving but not suffocating, and always ready for the next adventure; new jobs, new relationships, and new places to live.

She sent the letter back to me the next week. I found this to be a remarkable, if bizarre, feat, as she is suffering from advanced Parkinson’s. Even though she is losing her mind to the progressive disease, she can still pull off a letter. And we all know that most people with all their faculties cannot manage to get a letter in the mail.

I know she enjoyed the letter, she told me it gave her much pleasure, and I think she sent it back so that I could enjoy it too. Her note, which she wrote on the back of the envelope in the small tight hand writing typical of Parkinson’s , started, “Darling – What a wonderful letter! Shall I keep it for an album or send it back to you to enjoy?”

She knows that she is no longer capable of making photo albums, an art form in her case, long before it became popular to ‘scrap book’. She would have lovingly taped that letter in place, added a broad bar of color with a marker, and posted a few good shots of the kids and me. But I think she is worried it will just get lost and that it is best in the hands of an organized mother like me.

She has at least 20 massive photo albums, each one a work of art, with her good eye for color and design and her journalist’s mind for keeping newspaper articles or cards from interesting theater shows. The album that also contains the year of my birth, her fourth child, includes the front page of The Toronto Star announcing the first steps on the moon. They are archival treasures even if you are not a family member.

I think she sent the letter back to me so that I would put it in my album. And I don’t keep up with the energy of my mom; by the third child I had a box of photos I couldn’t get through. But I do try to keep up to her nutty level of energy. So I will keep that letter in my most recent album, strangely devoid of photos now that we have digital photography, and the note that she wrote on the envelope.

In a recent phone call she said, “I just smiled at a potted plant as if it was you,” and I laughed, because it was so absurd and funny. And she laughed too. But as I now know, the medication for Parkinson’s causes hallucinations and delusions.

The last time my older brother took her to the cottage she kept seeing crowds of people. She even approached the dock on her own, very slowly, hunched in pain with scoliosis and shuffling her feet in the Parkinsons’s style. When she got to the dock, she told me she approached a young boy but could not get his attention.

I am making myself cry as I write this, and Mom would appreciate that. I remember being somewhat embarrassed as a child by her rising emotions , her cracking voice or wobbling chin, if she made herself sad by telling us an emotional story.

She might not remember that now. She tells me that she is “losing her memory in great big chunks.” She feels she is unorganized and a bad cook so I remind her of all the wonderful meals she made, and her incredible organizational abilities that still make me feel inadequate.

The hallucinations are something my mom can handle; open to possibilities and experiences, she even wonders in the back of her scientific mind whether she saw ghosts at the cottage. Delusions might be harder. But my mom’s ability to see the world as an interesting experiment is helping us all.

On the back of the envelope in which she returned my loving letter of memories, she wrote,

“Peculiar world for me now: A Strange one. When I have a speedier pen or we’re on the phone I’ll tell you. But wait, Haven’t I already?”